Navigating the Intellectual Disability Waiver: A Workbook for Families

Navigating the IDW 2014 1

Navigating the Intellectual Disability Waiver:

A Workbook for Families

Department of Behavioral Health and Developmental Services

Division of Developmental Services

July 2014

Fifth Edition


Acknowledgments

This workbook is the result of a collaborative effort by a team of writers and reviewers

representing the Department of Behavioral Health and Developmental Services (DBHDS),

Division of Developmental Services (DDS), the Community Services Board (CSB) system and

the parent-advocate community. The goal of this workbook is to facilitate a clearer

understanding of the Intellectual Disability Waiver among family members of individuals

receiving or interested in receiving ID Waiver services and to promote enhanced dialogue

between them and the Support Coordinators who share its contents. This is the fifth edition.

Requests for copies of this workbook in a larger font should be

addressed to DDS at 804-371-0619.


Introduction: Families Are Important

It all starts with families. Every person, including persons with disabilities, is born into a family,

and, hopefully, first experiences love, trust and community within the family. He or she learns

about the world and explores his or her interests and abilities in the context of this family. In a

perfect world, the family is always available to provide needed support. In the life of a person

with intellectual disability, there may come a time when the family cannot provide all the

supports that are needed. When that time arrives, family members need information regarding

alternative supports.

If you are related to an individual with intellectual disability, you may have acted as an advocate

without even knowing it. You may have learned that it sometimes takes more than a family to

support your loved one. You know that it’s important for you to be as informed as possible

about the supports that are available to help him or her and how to access them. In addition to

neighbors, friends, teachers, bus drivers and other people in your community, you may have or

will encounter professionals who provide support in your home, agencies that provide services

during the day, job coaches, group home staff, Support Coordinators and others who will assist

you in supporting your family member.

The purpose of this booklet is to guide you through the paid supports available to your family

member through Virginia’s Home and Community-Based Intellectual Disability Waiver

(otherwise known as the ID Waiver). The ID Waiver has the most support options of any of the

Virginia Waivers and offers opportunities for flexibility and creativity. However, this can make

it rather difficult for family members to navigate. We hope that you will use this booklet to not

only become familiar with the ID Waiver, but also to become empowered to be an even better

advocate for your family member.

To the world, you may be only one person, but to one person, you may be the world.


Table of Contents

Chapter 1: Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Chapter 2: Introduction to the ID Waiver . . . . . . . . . . . . . . . . . . . . . . . . . …… 11

Chapter 3: Introduction to Support Coordination . . . . . . . . . . . . . . . . . . . . . . . 18

Chapter 4: Support Options in the Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Chapter 5: Other Support Options for a Meaningful Day . . . . . . . . . . . . . . . . . 36

Chapter 6: Consumer-Directed Services: The Individual is the Employer . . . . 40

Chapter 7: Other ID Waiver Services to Support Your Family

Member in the Community. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ……………. . 42

Chapter 8: Regional Support Teams …………………………………………..…45

Chapter 9: Who Can I Call if I Have More Questions? . . . . . . . . . . . . . . . . . .. . 45

Questions and Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . …………….46

Other Resources …………………………………………………………………..47

Workbook/Training Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . …………….48


CHAPTER 1: GLOSSARY

Assistive Technology: Specialized medical equipment, supplies, devices, controls and

appliances, which enable individuals to increase their abilities to perform activities of daily

living (ADLs), or perceive, control, or communicate within the environment in which they

live. This service also includes items necessary for life support, ancillary services, and

equipment necessary to the proper functioning of such items.

Authorized Representative (AR): A person named by the director of a DBHDS-licensed

provider to act on behalf of an individual who needs help with decision making, particularly

about sharing confidential information and issues requiring “informed consent.”

Behavioral Health Authority (BHA): The local agency, established by a city or county or

some combination of counties and/or cities that plans, provides, and evaluates behavioral

health and developmental services in the area it serves. This is another term for a

Community Services Board. In this booklet, we will use the term “CSB” to mean both CSBs

and BHAs.

Support Coordinator (SC): An employee or contractor of a Community Services Board or

Behavioral Health Authority who will give you information about services, help you obtain

them and make any needed changes over time.

Centers for Medicare and Medicaid Services (CMS): The unit of the Federal Department

of Health and Human Services that administers the Medicare and Medicaid programs.

Community Resource Consultants (CRC): Regionally-based Division of Developmental

Services staff responsible for providing training and technical assistance to Support

Coordinators and ID Waiver service providers.

Community Services Board (CSB): The local agency, established by a city or county or

some combination of counties and/or cities that plans, provides, and evaluates behavioral

health and developmental services in the area it serves.

Companion Services: Provide socialization and other non-medical support to adults 18 and

older at home or at various locations in the community. The focus is on “instrumental

activities of daily living” (e.g., assistance with housekeeping activities, preparation of meals,

shopping). This service may be agency-directed or consumer-directed.

Consumer-Directed Services: Offer the individual/family the option of hiring workers

directly, rather than using traditional agency staff.

Crisis Stabilization: Direct intervention (and may include one-to-one supervision) for

someone with intellectual disability who is experiencing serious psychiatric or behavioral

problems which jeopardize his/her current community living situation. The goal is to avoid

emergency psychiatric hospitalization or institutional admission or other out-of-home


placement, as well as to stabilize the individual and strengthen the current living situation so

the individual can be supported during and beyond the crisis period.

Day Support: Skill-building and supports for the acquisition, retention, or improvement of

self-help, socialization, community integration and adaptive skills. Day Support provides

opportunities for peer interactions, community integration and enhancement of social

networks. Supports may be provided to ensure an individual’s health and safety. These

services may be located in a center or provided in regular locations in the community.

Department of Medical Assistance Services (DMAS): The state agency responsible for

Medicaid-funded services in Virginia.

Department of Behavioral Health and Developmental Services (DBHDS): The state

agency that conducts many of the day-to-day functions of ID Waiver operations and

oversight.

Department of Social Services (DSS): The state agency that determines eligibility for

Medicaid benefits and “patient pay” amounts (i.e., what an individual owes toward the cost

of his/her own ID Waiver services).

Department for Aging and Rehabilitative Services (DARS): The state agency responsible

for assisting people with disability to assume a place in the workforce.

Enhanced Case Management: In certain situations, more frequent Support Coordinator

visits, at least every other visit being in an individual’s home, are required by Virginia’s

Settlement Agreement with the Department of Justice.

Environmental Modifications: Physical adaptations to an individual’s home or vehicle, and

in some cases, a workplace, when the modification exceeds the reasonable accommodation

requirements of the Americans with Disabilities Act (ADA), which provide direct medical or

remedial benefit to the individual. Environmental modifications are typically permanently

installed fixtures or modifications that change a site’s structure.

Enrollment: The process by which an eligible individual is formally assigned an available

ID Waiver slot. It is accomplished by the Support Coordinator sending certain completed

forms to the Division of Developmental Services. Once the forms are reviewed and signed

by a DDS representative, the individual is considered to be enrolled.

Family member/relative: For purposes of this workbook, this usually refers to the person in

your family with intellectual disability.

Family Resource Consultant (FRC): Division of Developmental Services staff responsible

for helping families learn about the opportunities that community service providers can offer

to their family members and linking individuals and families with Family and Peer Mentors.


Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF-IID): A

segregated Medicaid-funded setting in which nearly all of an individual’s habilitation,

medical, nutritional and therapeutic needs are met in one place. This is the institutional

placement that is "waived" when an individual chooses the ID Waiver.

Individual: This usually refers to the person with intellectual disability.

Legal Guardian: A person who has been appointed by a court of law to act as decision-

maker in matters requiring “informed consent” (i.e., situations in which there are clearly

more risks involved than those involved in typical day-to-day living) for another person who

has been found by the court to lack the capacity to weigh the risks and benefits of such

decisions. Parents of children under 18 are always considered their children’s legal guardian,

unless those rights have been taken away by the court.

Level of Functioning Survey: The tool used in the ID Waiver to determine if an individual

meets the level of care required in an ICF-IID, thereby meeting one of the criteria for

eligibility for the ID Waiver. It is completed by the Support Coordinator every year a person

is receiving services through the ID Waiver.

Division of Developmental Services (DDS): The division of the Department of Behavioral

Health and Developmental Services that has the day-to-day responsibilities for the ID Waiver

services, including preauthorization of services, data management and technical assistance

and training to providers.

Patient Pay: A cash amount, determined by the local Department of Social Services, that

some individuals owe each month toward the cost of their own ID Waiver services. Patient

Pay is usually the amount in excess of the standard monthly personal allowance, which is

based upon the maximum amount of the Supplement Security Income (SSI) payment. People

who work are afforded a higher allowance. It is not the same as a co-pay for medications in

that it is based on the individual’s monthly income and the full amount is paid only once per

month.

Personal Assistance: Direct support with activities of daily living (e.g., bathing, personal

hygiene skills, dressing, transferring, etc.), instrumental activities of daily living (e.g.,

support with housekeeping activities, preparation of meals, shopping, etc.), community

access, support with medication and other medical needs, and, with the exception of

Companion Services, monitoring health status and physical condition. These services may

be provided in home and community settings to enable an individual to maintain the health

status and functional skills necessary to live in the community or participate in community

activities. Consumer-Directed Services offer the individual/family the option of hiring

workers directly, rather than using traditional agency staff.

Person-Centered Individual Support Plan (PC-ISP): The document that addresses needs

and desires in all life areas of individuals who receive ID Waiver services. It includes

providers’ Plans for Supports, as indicated by the individual’s health care and support needs

and is based on person-centered thinking and practices.


Person –Centered Planning: A planning process that focuses on the needs and preferences

of the individual (not the system or service availability) and empowers and supports

individuals in defining the direction for their own lives. Person-centered planning promotes

self-determination, community inclusion and typical lives. It builds on the individual’s

strengths, personality and interests. It helps him or her to become an integral part of the

neighborhood and community by promoting participation in the life of the community and

building relationships with people with whom he or she wants to spend time. It assists the

individual in making personal choices and achieving dreams and a desirable lifestyle. It most

often begins with a team of people who care about the individual and are willing to invest

time and effort to ensure that he or she experiences a richer, more satisfying life.

Personal Emergency Response Systems (PERS): An electronic device that enables certain

individuals to secure help in an emergency. PERS electronically monitors individual safety in

the home and provides access to emergency crisis intervention for medical or environmental

emergencies through the provision of a two-way voice communication system that dials a 24-

hour response or monitoring center upon activation and via the individual’s home telephone

line. When appropriate, PERS may also include medication-monitoring devices.

Provider: An agency or individual that has the necessary credentials to deliver services to

individuals under the ID Waiver, including an agreement with the Department of Medical

Assistance Services (DMAS).

Prevocational Services: Services aimed at preparing an individual for paid employment or

volunteer work, but which are not job task oriented. They are aimed at a more generalized

result. Prevocational services are provided to individuals who are not expected to join the

regular work force without supports or participate in a transitional sheltered workshop

program within a year (excluding supported employment programs).

Residential Support Services: Supports provided in an individual’s home, community, or in

a licensed or approved residence such as an apartment, family home, group home, or

sponsored residential home. These supports should enable the individual to improve or

maintain his or her health/medical status, live at home and use the community, improve

abilities and acquire new home living or community skills, and demonstrate safe and

appropriate behavior for his or her community.

Respite Services: Temporary, substitute care for that which is normally provided by the

family or other unpaid, primary caregiver of an individual. These short-term services may be

provided because of the primary caregiver’s absence in an emergency or the on-going need

for relief. These services may be agency-directed or consumer-directed.

Services Facilitation (SF): A service that assists the individual and family members in

arranging for, directing, and managing services provided through the consumer-directed

model. Individuals choosing the CD model of service delivery may receive supports from a

Services Facilitator (SF) who meets the required knowledge, skills and abilities necessary for

this service, is self-employed or hired by an agency. Services Facilitators provide required


training and support to individuals and family members to hire, train and dismiss employees

who provide supports to the individual in his or her own home and community.

Skilled Nursing Services: Nursing services ordered by a physician for individuals with

serious medical conditions and complex health care needs. This service is available only for

individuals for whom these services cannot be accessed through another means. These

services may be provided in an individual’s home, community setting, or both.

Slot: An opening or vacancy of Waiver services for an individual.

Social Security Disability Income (SSDI): A cash benefit awarded through Social Security

that may come to a person with a disability whose Social Security tax-paying parent has died.

Supplemental Security Income (SSI): Another Social Security cash benefit determined by

the Department of Social Services that may come to a person due to age or disability due to

his/her financial situation.

Supported Employment: Job skills training in settings in which persons without disability

are typically employed. This service is for individuals with intellectual disability for whom

competitive employment at or above the minimum wage is unlikely without on-going

supports and who, because of their disability, need ongoing post-employment support to

perform in a work setting. Supported Employment defined as intermittent support, usually

provided one-on-one by a job coach to an individual in a supported employment position

who, during most of the time on the job site, performs independently. Group supported

employment is defined as continuous support provided by staff to eight or fewer individuals

with disability in an enclave, work crew, entrepreneurial model or benchwork model.

Supports Intensity Scale (SIS): An assessment instrument that assesses strengths, needs

and wishes and the level of supports that an individual needs. The SIS reflects a positive

way of thinking about an assessment, focusing on the support needs for the individual to be

successful, not on his or her deficits. The SIS is completed by the team, including the

person, his or her family and significant others, the Support Coordinator, and other providers,

at least every three years for adults (every 2 years for children under 16) or sooner if needed.

Therapeutic Consultation: Expertise, training, and technical assistance in the individual’s

home or community, in certain specialty areas to assist family members, caregivers, and

other service providers in supporting the individual to facilitate implementation of the

individual’s desired outcomes as identified in the Individual Support Plan. The specialty

areas are: Psychology, Behavior, Speech and Language Pathology, Occupational Therapy,

Physical Therapy, Therapeutic Recreation and Rehabilitation Engineering.

Transition Services: Purchase of services and essential goods for anyone who is being

discharged from an ICF-IID/NH/Long-stay Hospital, receiving a Money Follows the Person

(MFP) slot or currently receiving ID Waiver services and moving into a private residence

(includes a family member’s home, one’s own apt or home, adult foster care, or sponsored

residential). Examples of allowable services/goods: security deposits, household furnishings,


utility deposits, pest extermination, move-in cleaning service, moving expenses, proof of

identity documents, delivery of appliances.


CHAPTER 2: INTRODUCTION TO THE ID WAIVER

What is a “Waiver?”

States apply to the federal Medicaid agency, known as the Centers for Medicare and Medicaid

Services (CMS) for Medicaid Waivers. This enables states to waive the usual requirement that

individuals must reside in an institution in order to receive Medicaid funding for services. In this

way, Medicaid pays for certain community-based alternatives to institutional care.

There are a number of different Waivers in Virginia. Each is targeted to a different group of

people in need of services in the community instead of an institution.

A Brief History of Virginia’s ID Waiver

Virginia first applied for a Home and Community-Based Waiver for persons with intellectual

disability in 1990, with services beginning in early 1991. That year 130 people received services

through what is now known as the ID Waiver. The Waiver was revised and several new services

were added in 1994 to better support individuals in a wider variety of ways. In 2000 – 2001, a

new Waiver was developed that revised existing services and added new services, in particular

ones that could be directed by the individual or the family. It was submitted to CMS and

approved in 2001. Currently Virginia’s ID Waiver provides eighteen different services and

supports over 8000 individuals.

The state agency that administers the ID Waiver in Virginia is the Department of Medical

Assistance Services (DMAS). Day-to-day ID Waiver operations are managed by the Department

of Behavioral Health and Developmental Services (DBHDS). Locally, ID Waiver services are

coordinated by Support Coordinators employed by Community Services Boards (CSBs) (called

Behavioral Health Authorities in some localities). The actual services are delivered by CSBs and

private providers across the state. [See Diagram 1]


Diagram 1: “The Big Picture”

Centers for Medicare

and Medicaid Services

(Federal)

Virginia General

Assembly

(State)

Department of

Medical Assistance

Services

(DMAS)

Department of Behavioral Health

& Developmental Services

(DBHDS)

Community Services

Boards

(CSBs/BHAs)

(Local)

Support Coordinator

(CSB)

Waiver Services

Providers

(Private or CSB)


What Makes a Person Eligible for the ID Waiver?

An individual is deemed eligible for ID Waiver services based on three factors:

In order to receive ID Waiver services, an individual must meet eligibility requirements and a

“slot” must be available. A slot is a term referring to an opportunity for a single individual to

receive Waiver services. A slot is assigned to each ID Waiver recipient. The number of slots is

limited by the availability of Medicaid funding for ID Waiver services. CMS asks each state to

determine the number of people they expect to serve in order to determine the state’s slot

allocation.

How are slots distributed and assigned?

Each CSB has a designated number of slots. If an assigned slot becomes vacant, (e.g., the ID

Waiver recipient moves to another state, refuses services or dies), the CSB must use it in a timely

manner to provide ID Waiver services to another eligible individual. Additional slots, beyond

each CSB’s present number, are available only when the General Assembly allocates more funds

in Virginia’s budget for ID Waiver.

Diagnostic Eligibility: Individuals must have an evaluation that

reflects their current level of intellectual and adaptive functioning.

This requires:

o For individuals six years of age or older, a psychological

evaluation completed by a licensed professional that states a

diagnosis of mental retardation / intellectual disability;

o For individuals under age six, either a psychological or standardized developmental evaluation that states that the

child has a diagnosis of mental retardation / intellectual

disability or is at developmental risk.

Functional Eligibility: All individuals receiving ID Waiver services

must meet the ICF-IID level of care. This is done by the case

manager completing the “Level of Functioning Survey” with the

individual and persons who know that individual well. The

individual must have significant needs in two or more of the survey’s

seven categories.

Financial Eligibility: An eligibility worker from the local

Department of Social Services determines an individual’s financial

eligibility for Medicaid. Some individuals who would not ordinarily

qualify financially for Medicaid may qualify after being approved for

the ID Waiver.


As additional slots become available, they are allocated to CSBs based on their percentage of

people on the Statewide Urgent Needs Waiting List when compared to the total number of

people on the Statewide Urgent Needs Waiting List. If a CSB does not have any individuals who

meet the urgent criteria on their Waiting List (see below for discussion of “urgent criteria”), they

will not be given additional slots until all individuals in the State who meet the urgent criteria

have been served. All individuals in the state who meet the urgent criteria must be served before

anyone from the non-urgent list can be served.

The CSB determines from among the individuals in their catchment area meeting the urgent

criteria, which person is in most critical need of services at the time the slot becomes available.

They may not use any predetermined numerical or chronological order or target a particular

subcategory of applicants in the selection process when assigning slots (e.g., the selection of

adults over children). DMAS and DBHDS evaluate the distribution of services to all eligible

persons.

For individuals living in Training Centers, a waiver slot can be obtained for discharge and

transition to living in the community. In some cases, a person leaving a Training Center or

Nursing Home may qualify for additional funding through the Money Follows the Person grant.

This additional funding is available to people moving into a qualified residence such as an

individual or family home, a Sponsored Residential Home, or a group home with four or fewer

people.

What is this “waiting list?”

Based on the criteria below, CSB Support Coordinators assess whether applicants may be

included on one of the three waiting lists: the urgent, non-urgent or planning list. DBHDS

maintains a Statewide Waiting List that includes the names, of all individuals meeting the

urgent and non-urgent criteria. The urgency of need of each individual on each CSB’s

waiting list is re-evaluated quarterly by the Support Coordinator and any changes are

forwarded to DBHDS for updating the Statewide Waiting List.

1. Urgent

The individual:

has a diagnosis of mental retardation / intellectual disability,

meets the ICF-IID criteria,

needs services within 30 days,

is considered to be at significant risk and

would accept services immediately if they are offered.


In addition, the individual must meet at least one of the following criteria:

2. Non-urgent

The individual meets the following criteria:

When an individual requests a service funded by the ID Waiver, but is placed on either of the

above waiting lists or moved from one list to another, the Support Coordinator must send a letter

notifying him/her of the right to appeal to DMAS the delay in receipt of services.

3. Planning

These lists are maintained internally by the CSBs and are not considered part of the

Statewide Waiver Waiting List. Individuals on these lists:

has a diagnosis of mental retardation / intellectual disability and

meets the Level of Functioning Survey eligibility criteria,

needs services within 30 days, but

does not meet any of the urgent criteria above.

meet diagnostic and functional eligibility criteria,

do not currently need services within 30 days, but

will most likely need ID Waiver services in the future.

Both primary caregivers are 55 years of age or older, or if there is one primary

caregiver, that primary caregiver is 55 years of age or older;

The individual is living with a primary caregiver who is providing the service

voluntarily and without pay and the primary caregiver indicates that he or she can

no longer care for the individual with ID;

There is a clear risk of abuse, neglect, or exploitation;

One primary caregiver, or both caregivers, has a chronic or long-term physical or

psychiatric condition or conditions which significantly limits the abilities of the

primary caregiver or caregivers to care for the individual with ID;

The individual is aging out of a publicly funded residential placement or otherwise

becoming homeless (exclusive of children who are graduating from high school);

The individual lives with the primary caregiver and there is a risk to the health or

safety of the individual, primary caregiver, or other individuals living in the home

due to either of the following conditions:

The individual’s behavior or behaviors present a risk to himself or others

which cannot be effectively managed by the primary caregiver even with

generic or specialized support arranged or provided by the CSB; or

There are physical care needs (such as lifting or bathing) or medical needs

that cannot be managed by the primary caregiver even with generic or

specialized supports arranged or provided by the CSB.


While my family member is on the ID Waiver Statewide Waiting List do I have to pay for Support Coordination services?

It is not required that an individual on the waiting list receive Support Coordination services,

however the Support Coordinator should contact you and your family member quarterly to

determine if anything has changed that affects your position on the waiting list. Some

individuals on the waiting list are not financially eligible for Medicaid at the time, but will be

when they are approved for the ID Waiver. If you feel that your family member needs Support

Coordination services and he or she is not currently Medicaid-eligible, the CSB may provide the

services on a sliding fee scale.

What kinds of services are available in Virginia through the ID Waiver?

The following is a listing of all of the services that are available to individuals who have been

assigned an ID Waiver slot. See the glossary and the sections describing each service for more

details.

Which services can my family member have?

Access to ID Waiver services is based on demonstrated need. You should provide the Support

Coordinator with enough information about your family member’s situation to help the Support

Coordinator determine and explain to others what services are needed and why. A menu of

services can be created to meet the individual’s needs.

Residential Support Services (in-home and congregate)

Day Support

Supported Employment

Prevocational

Personal Assistance – both agency and consumer-directed

Respite – both agency and consumer-directed

Companion – both agency and consumer-directed

Services Facilitation

Assistive technology

Environmental modifications

Skilled Nursing

Therapeutic Consultation

Crisis Stabilization

Personal Emergency Response Systems (PERS)

Transition Services


Will my relative or I have to pay for services?

Some individuals may have to pay for a part of the monthly cost of their ID Waiver services, if

they have “excess income” as determined by the Department of Social Services. This is known

as “patient pay.” DMAS deducts any patient pay from their reimbursement to the provider (or

employee in the case of Consumer-Directed Services), who must in turn collect it from the

individual. The CSB Support Coordinator should inform you if this is owed.

Providers are not allowed to bill either the individual receiving ID Waiver services or his/her

family members additional fees for the cost of the services paid for by Medicaid.


CHAPTER 3: INTRODUCTION TO SUPPORT

COORDINATION

Support Coordination Services Structure

Support Coordinators either work directly for a CSB or contract with one.

Support Coordinators usually work in a Support Coordination division or group within the CSB.

Some of these Support Coordination groups report to a Disability Services Director (e.g.,

Support Coordination for persons with intellectual disability might report to the CSB’s Director

of Intellectual Disability services), while some operate as a separate division with Support

Coordination for each different disability group reporting to a single supervisor (e.g. Community

Services Director).

Although Support Coordination is not technically an ID Waiver service, it is required for all ID

Waiver recipients and paid for by Medicaid.

How do we find a Support Coordinator?

Contact your local Community Services Board. The phone number can usually be found in the

city or county government section of the phone book under “Mental Health/Mental

Retardation/Intellectual Disability.” Ask to speak to either a Support Coordinator Supervisor or

intake worker in order to request services. For a listing of contact information for all CSBs,

check out “Locate Services in Virginia” on the DBHDS website (www.DBHDS.virginia.gov).

What is the role of the Support Coordinator?

The CSB is the single point of entry for the ID Waiver. This means that individuals desiring ID

Waiver must request services through a Support Coordinator. The Support Coordinator should

find out what types of services your relative needs and offer and document his or her choice of

Waiver or institutional care. The Support Coordinator will gather information from you such as:

historical information about your family member

past services used and how effective they were

public benefits currently being received (such as Medicaid, Supplemental

Security Income (SSI), Social Security Disability Income (SSDI), and others)

your family member’s hopes and dreams and their vision of a good life


The Support Coordinator will explain about the need for sharing information and ask your family

member and you (see sections below about signing forms) to sign release of information forms,

to permit him or her to obtain copies of past evaluations (such as reports of physicals or

psychological testing) or schedule new ones.

What is a “release of information” form?

Everyone has a right to confidentiality when it comes to their private health care information.

That means information about individuals receiving ID Waiver services cannot be shared with

anyone without their permission. Because some information sharing is necessary between

providers, or between providers and family members, forms authorizing this exchange of

information must be signed by the individual. If the individual has a legal guardian or authorized

representative, that person must sign the release of information form too. However, only that

information that is truly necessary for service provision is to be shared.

Speaking of signing forms, do I have to sign all forms for my family member?

You do, only if you are his or her legal guardian, either because he or she is a minor child (under

18) or you have been granted guardianship by a court of law. You may also be required to sign

if you are his or her authorized representative (AR). An AR is a person designated by a provider

agency to give consent when a qualified professional has found your family member to be unable

to sufficiently weigh risks and benefits of his or her decisions.

What types of evaluations are done and how often?

If your family member has Medicaid (or could be eligible) and is requesting that his or her

supports be funded through the ID Waiver, the Support Coordinator will need to complete the

Level of Functioning Survey (LOF), which was explained in the previous section, to help

determine eligibility. The LOF is completed before placing an individual on the waiting list. If

someone has been on the waiting list for a long time, it will need to be updated shortly before ID

Waiver services actually start. Then it is completed every year an individual receives ID Waiver

to funding to assure continued eligibility. You should expect to assist the Support Coordinator in

completing this survey, especially the very first time. It includes questions about your family

member’s health status, communication skills, ability to learn new tasks, self-care, mobility,

behavior and community living skills.

The Support Coordinator must also confirm that your family member is diagnostically eligible

for ID Waiver (i.e., has a diagnosis of mental retardation / intellectual disability) by obtaining a

psychological evaluation that reflects his or her current abilities.

In addition, at the beginning of services and at least every three years for adults (every two years

for children under 16) thereafter, you and your family member will be requested to provide

“Nothing about me, without me!”


information about what types of supports you and your relative currently need, your preferences,

long-term goals and dreams for the future, and how best to achieve them. Much of this

information will be incorporated into the Supports Intensity Scale (SIS) that the Support

Coordinator completes with the team that summarizes the strengths and needs of the individual

in major life areas such as home & community living, lifelong learning, employment, social

activities, and health and safety. The SIS will be shared with the Waiver providers so that they

can be equally well-informed about your family member’s past experiences and needs for the

future.

Who decides what ID Waiver services my family member will get and who provides them?

As described in the previous section, once an individual is found eligible for the ID Waiver, he

or she doesn’t necessarily start to receive funding for needed supports right away due to

Virginia’s lengthy waiting list. When there is a slot available, the Support Coordinator informs

the individual and family of the full array of ID Waiver services and the individual/family selects

providers for needed services. [See Diagram 2]

Choice is an essential element of

the ID Waiver.


It is important for you and your family member to make a decision about services and providers

as quickly as possible, since your family member was selected as the one in most need from

among many others in need of services at this time. Whenever there is a delay of more than 60

days from the time of enrollment in getting ID Waiver services started, the Support Coordinator

must request from DDS that the slot be retained for your family member. Your family

member/you should receive a copy of this form.

A worksheet for keeping notes about providers that you and your family member consider is

located on page 23.


Diagram 2: How do I help my loved one choose a provider?

Review the provider list that is shared by the CSB Support Coordinator (SC). CSBs can assist you with locating providers operating in their vicinity. Some have providers’

brochures and informational flyers available for you to review. Some will accompany or help

you arrange a visit to several providers.

You and your family member may choose a provider in parts of the state other than your own,

particularly if he or she is willing to move. Support Coordinators can obtain information

about providers in other areas through DBHDS and DMAS.

Select some providers to contact and visit. Learn as much about their operation

as you can before making a decision. Providers all have different approaches.

Complete the “Virginia Home and Community Based Waiver Choice of

Providers” form, indicating your and your family member’s preference.

Some questions to ask the provider:

1) How long have you been in

business?

2) Is your license in good standing?

3) What other fees do you charge?

4) What are your policies on family

visitation?

5) What is your philosophy of

providing services to persons with

intellectual disability?

6) When will we hear back from you?

7) Can you provide references/names

of current families who will talk to us?

Some questions to ask the SC:

1) Who are the providers in this area?

2) Are there other providers in other

communities who specialize in. . . ?

3) What type of service provider will

my relative need?

4) Which providers have successfully

supported individuals with my family’s

cultural, spiritual, language and

lifestyle considerations?

5) Are there issues to consider related

to providers’ location in a rural vs.

urban setting?

6) Are there family members who have

agreed to be contacted about their

experiences?


Service Providers Worksheet

Name of provider contacted/visited: _____________________________

Type of provider: _____________________________________________

Notes on contact/visit; impressions:

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

__________________

______________________________________________________________________________

______


Type of provider: _____________________________________________


______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

________________________


Type of provider: _____________________________________________


______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________


What is a Person Centered Individual Support Plan?

Within 30 days of enrolling and after ID Waiver services and providers have been chosen, the

Support Coordinator must coordinate the development of a written plan for delivering supports,

called the Person Centered Individual Support Plan (PC-ISP). The PC-ISP is the individual’s

complete plan of services and supports, and includes the SIS, a list of the individual’s desired

outcomes and vision for a good life, and providers’ Plans for Supports (PFS). PFSs are

developed by each service provider and include input from the person and the Support

Coordinator. The PFSs should address the individual’s needs and preferences, desired

outcomes, and activities necessary to meet those outcomes, as well as instructions and schedules

in that particular provider’s service area.

According to person-centered practices, the desires of the person are central in guiding the

outcomes of the planning process. You and your family member (to the best of his or her

abilities) should be major contributors to the PC-ISP (see the worksheet on the next page). Other

team members involved in a person-centered process for developing the PC-ISP are the

provider(s) you and your family member selected to provide the ID Waiver service(s) and any

other people you or your family member choose to help in the planning. The PC-ISP includes all

the PFSs developed by this team, which describe the specific supports that will be rendered. The

supports described in the PFSs must be ones that Medicaid will reimburse (see individual service

sections for a description). Medicaid will only pay for supports that are in the PFS, as agreed to

by the individual/family.

How does the team help my family member set desired outcomes?

Knowing and listening to the individual is the key. One tool to help the team in this process is

the following Person-Centered Planning Good Life Worksheet.


Personal Profile: A GOOD LIFE

A Good Life: What does a good life look like to me?

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Talents, Strengths and Contributions: What are my gifts and talents? What do people

who know and care about me say about my strengths? How do I contribute to friends, family and my community?

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What’s working? Things I would like to stay the same

What’s not working? Things I would like to see changed

Work and Alternates to Work

(Days, Evenings and Weekends)

Community and Interests

(Neighborhood , Inclusion in community, Safety in my community, Things I enjoy/hobbies)

Relationships

(Family and friends, Being understood by others, Qualities of those who support me, Culture, Traditions, Spirituality, Religion)


Home

(Home, Routines, Independence, Privacy, Safety at home)

Money

(Money and finances, Personal control)

Transportation and Travel

Health and Safety

(Foods, Cooking, Meals and supplements, Exercise and movement, Medications and wellness, Overall wellness)


How often is a PC-ISP done?

Person Centered Individual Support Plans are updated by the Support Coordinator and providers

annually. Expect to meet at least once a year to review how things are going, what has changed

and whether your family member’s outcomes are being met. If things aren’t going as well as

expected, reasons should be discussed and changes should be made. You may request to receive

a copy of your family member’s PC-ISP, if you are his or her guardian or authorized

representative (or if he or she signs a release of information).

What Else Does a Support Coordinator Do?

Preauthorization

Prior to the start of services, the Support Coordinator works with the state Division of

Developmental Services staff to ensure that the ID Waiver services in the PC-ISP are

preauthorized for Medicaid billing. While it might delay the start of services a bit, each ID

Waiver service must be preauthorized before service delivery begins or the provider may not get

paid.

Your family member should receive a computer-generated letter from DMAS notifying him or

her that services have been authorized. Services should begin no longer than 60 days from the

date the Support Coordinator receives word back from DBHDS that your family member is

enrolled in the Waiver.

What if there are problems with services getting started?

Occasionally there are barriers to ID Waiver services commencing when you and your family

member would like to see them begin. For example,

You may have difficulty finding a provider that is a good match with your family

member or even with finding a provider for a needed service in your area.

The chosen provider may have difficulty hiring suitable staff to support your family

member.

There may be a problem with the paperwork submitted for preauthorization.

ODS preauthorization staff may ask for additional information that supports the need or

benefit of a particular service.

In all of these scenarios, it is important for the Support Coordinator to keep in contact with you

and your family member, as he or she assists in working through the difficulty.

More ways a Support Coordinator helps. . .

Making modifications and new linkages over time

In addition to assisting you to access ID Waiver services, Support Coordinators coordinate

resources and services for the whole person. This involves being responsive to your family

member’s changing needs by continuing to link him or her to needed ID Waiver and non-ID

Waiver services (such as medical professionals, recreation opportunities, etc.) over time.


An individual’s PC-ISP is developed once a year, and while this is an excellent time to review

the success of the current supports and discuss needed changes, modifications can be made at

any time. Plans should be modified when significant changes in a person’s life or health status

indicate the need for a new plan.

Face-to-face visits to ensure satisfaction

The Support Coordinator should check with your family member periodically (and occasionally

with you too) to ensure that he or she is satisfied and things are going well. Expect these face to

face contacts to occur in the various places where services are provided, including the home, at

least every 90 days, although some situations may require Enhanced Case Management. This

requires that the Support Coordinator meet with the individual every 30 days, and that at least

every other month the meeting takes place in the individual’s home.

On-going monitoring/review of services

The Support Coordinator is required to check-in with each service provider at least quarterly to

find out how things are going with the individual and if changes are needed in the PC-ISP. This

is typically done through phone calls and/or a person-centered review process. Family members

are encouraged to check-in with providers and the Support Coordinator periodically as well.

Helping to change service providers

If you or your family member becomes dissatisfied with a service provider, the Support

Coordinator can help you articulate your concerns and desired solution to the service provider.

If, after a period of time, you are still unhappy (or immediately, if your concerns are very grave),

you may want to choose another service provider. The Support Coordinator can help you with

finding a new provider.

Changing Support Coordinators

Sometimes we just don’t “connect” with a certain professional. Sometimes, we are dissatisfied

with the handling of a certain situation. You and your family member may want to try a

different person to support you both. If your family member (or you, if you are the legal

guardian or authorized representative) would prefer to work with another Support Coordinator,

make this known to the current Support Coordinator’s supervisor.

Although your family member will typically receive Support Coordination from the CSB in your

locality, you may request Support Coordination from other CSBs nearby. When you select a

CSB outside of your locality, that CSB must have both the resources and willingness to serve

your family member.

Offering the formal right to appeal

Whenever a person is added to the Statewide Waiting List or moved from one list to another, the

Support Coordinator sends a letter offering the right to appeal the denial of immediate access to

ID Waiver services. Other times when an individual has the right to appeal are when services are

denied, suspended, reduced, or terminated, or when requests are not acted upon promptly.

Information about the appeal process is contained in a DMAS document entitled “About Your


Appeal Rights” which the Support Coordinator should review with each individual during the

intake process. You do not need a letter from the Support Coordinator in order to appeal a

decision made by the CSB, ODS or DMAS.

A record of Support Coordination information for my family member:

Agency name: ____________________________________________

Support Coordinator name: __________________________________

Phone number: _________________________________

E-mail: _______________________________________

Best days/times to call: _____________________________________

Other contact names and numbers at the CSB:

________________________________________________________

________________________________________________________

________________________________________________________

________________________________________________________

________________________________________________________


CHAPTER 4: SUPPORT OPTIONS IN THE HOME

Many individuals with intellectual disability require supports on a daily basis to manage their

personal care needs, access resources in the community, and to live safely and healthfully. Some

want to learn new skills in order to be more independent and successful. Some need support and

care while their primary caregiver takes a break. All of these home-based needs can be met

through the ID Waiver in the form of one or more of the following services.

Skill Building in the Home: Residential Support

Residential Support services are provided primarily in

an individual’s home or apartment or in a licensed home.

One of the important things to remember about Residential Support services is that they are

designed to help an individual gain more skills in their home setting and community at large.

The types of supports ID Waiver will fund through this service are:

Skill-building (teaching new skills) in areas including personal care activities (such as

bathing, grooming, dressing, eating, etc.), getting around, communication, household

chores, food preparation, money management, skills related to the use of community

resources (such as transportation, shopping, eating in restaurants, social and recreational

activities), and learning acceptable responses to difficult situations.

Monitoring individuals’ health and physical condition and ensuring their safety through

safety supports.

Supporting (helping the individual to get needed things done) with such things as

medication or other medical needs, personal care, activities of daily living, transportation

and the use of community resources.

Who can provide Residential Support?

Nearly all the ID Waiver Residential services are provided by agencies that are licensed by

DBHDS. The process to obtain a license is a rigorous one. It requires that a potential provider:

demonstrate that the agency has sufficient financial resources,

submit a description of the services he/she plans to provide as well as staff qualifications

obtain a business license, develop policies and procedures for records management

develop policies that address human rights and are in compliance with the state Human

Rights regulations


affiliate with a Local Human Rights Committee

employ a person with experience working with people with intellectual disability (a

“Qualified Intellectual Disability Professional or QIDP”) to supervise staff and oversee

assessments and PC-ISPs

submit to inspections of the physical site

Licenses are issued for varying periods of time and the DBHDS Office of Licensing regularly

conducts unannounced reviews of all providers to ensure continued compliance with regulations.

ID Waiver Residential Support services are provided in the following settings by DBHDS-

licensed providers across Virginia:

Group homes (for adults or children), in which 3 or more individuals dwell in the same

home in the community that provides 24-hour supervision with paid staff

Sponsored Residential homes, in which a family or single person is paid to host up to two

individuals with disability in their own home

Supervised apartments, in which an individual (alone or with roommates) receives

supports at various times of the day (normally not overnight) from staff members

Individual’s own (or family) home, in which an individual receives supports at needed

times during the day from paid staff who provide supports as needed and then leave

There are a few localities that permit Adult Foster Care Homes (AFCs) to also be ID Waiver

providers. These are families’ or single persons’ own homes that have been approved by the

Department of Social Services (DSS) to include up to 3 persons requiring support. DSS provides

minimal oversight, necessitating additional monitoring to be provided by the Support

Coordinator.

Will my family member owe anything if we choose Residential services away from our

family home?

While the ID Waiver Residential Support may pay for the types of supports described above, it

will not pay for the costs of room, board and general supervision. “General supervision” is

defined as times when the staff is present, but not providing skill-building or regular or safety

supports. These costs are borne by the individual and should be disclosed by the provider and

considered prior to choosing a provider.


Balancing Family and Service Time

If your family member lives at home and is receiving Residential Supports, it is very important

that he or she be there during scheduled service times, unless you call the provider ahead of time.

Maintaining family connections is very important. If your family member is receiving services

in a group home, he or she is encouraged to spend time with his or her family from time to time,

as desired. Contact the group home to arrange the visit.

The following three ID Waiver services are available as “agency-directed” services or “consumer-

directed” services. For more information on consumer-directed services, see the next section of this

workbook.

Assistance and Skills Maintenance: Personal Assistance

Another home-based ID Waiver service is Personal Assistance. This service is designed for

individuals who need support with activities of daily living:

bathing

dressing

grooming

using the restroom

transferring, etc.

Staff providing this service may also support the individual with:

housekeeping,

meal preparation,

shopping,

using community resources,

taking medication or other medical needs, and

monitoring health status and physical condition,

general supervision.

Who can provide Personal Assistance?

Providers of Personal Assistance in family homes are either home health types of agencies,

licensed by the Department of Health whose staff have a nursing background, or DBHDS-

licensed Residential Services providers.

What’s the difference between Residential Support and Personal Assistance?

While Residential Support provides support to individuals in many of the same areas as Personal

Assistance, it also has a skill-building component. On the other hand, Personal Assistance is for

Navigating the IDW 2014

33

individuals for whom skill-building in the above skills is not the priority or whose skill-building

needs are being met elsewhere.

Are there any restrictions?

School children may not receive Personal Assistance during school hours. This is the

responsibility of the school system. Also, Personal Assistance is not permitted for those living in

a DSS-licensed Assisted Living Facility or getting Residential Support services in a group home.

These supports are designed to help the individual receiving ID Waiver. Staff are not to be

cooking and cleaning for the whole family or caring for the individual’s siblings.

Every individual receiving Personal Assistance must have a “back-up plan.” That means a plan

for getting his or her needs met if the Personal Assistant fails to show up one day. The back-up

plan might mean that a parent stays home from work to ensure that the individual’s needs are

met or it might mean that a neighbor drops by to check on him/her.

“I Need a Break!” : Respite Services

In recognition of the fact that primary caregivers need

breaks from their care giving responsibilities, whether for

a few hours, a few days, or even up to one month a year, Respite services are available through the

ID Waiver.

The same sorts of supports mentioned above for Personal Assistance may be provided under Respite:

bathing

dressing

transferring

using the restroom

grooming

Staff providing this service may also support the individual with

housekeeping

meal preparation

shopping

using community resources

taking medication or other medical needs, and

monitoring health status and physical condition

Does my family member have to leave home to get Respite?

No! Respite may be provided in any of the following settings:

the individual’s home

a group home with a licensed respite bed

a licensed respite center

other community locations


34

What types of agencies provide this service?

Either home health types of agencies who are licensed by the Department of Health, or DBHDS-licensed

Residential services providers.

What are the restrictions?

The main limitation is the number of hours per state fiscal year (July 1-June 30): 480. Respite may be

used in hourly increments as needed throughout the year. This yearly limitation applies to situations in

which an individual is receiving a combination of agency-directed Respite and consumer-directed Respite

(see section titled “You Are the Employer”) as well.

Only for those with unpaid caregivers

Since the purpose of Respite is to give a break to those unpaid caregivers, it is not permitted for those

living in a group home, sponsored residential home or an Assisted Living Facility. In those settings, the

individual is supported by paid staff.

Someone to Help Me Be a Part of my Community: Companion Services

Companion services are sometimes better explained by what they’re not. They are not

medically-oriented services. They do not include the “up close and personal” tasks of

activities of daily living. They do not include skill building.

They do involve non-medical care, support with things like banking, shopping, meal preparation,

housekeeping tasks, using the community, recreational opportunities and volunteering in the community.

Companion services may be provided in the individual’s home or other community settings.

Helping the individual get out into his or her community, experience what it has to offer and be a

part of it and make new friends are major responsibilities of Companions.

What types of agencies provide these services?

Like Personal Assistance and Respite, home health agencies licensed by the Department of Health and

DBHDS-licensed Residential services providers can provide Companion services. Also, since some

individuals would rather be accompanied in the community by a single companion than with a group of

individuals receiving Day Support services (see next section), this service is commonly used by those who

“My companion takes me to the opera and hiking in the mountains!”

- Ben K.

480 hours =

20 24-hour days,

or 60 8-hour days,

or other combinations of hours per month, based on need


35

need alternatives to typical day services. Thus, DBHDS-licensed Day Support providers can be providers

as well.


Companion services are only available to adults (18 years and older), and are limited to no more than eight

hours per day.


36

CHAPTER 5: OTHER SUPPORT OPTIONS FOR

A MEANINGFUL DAY

We all want to feel successful and be productive. Children attend school, adults work or volunteer and even

retirees keep busy with activities of their choice. The ID Waiver offers several different options for day

activities for individuals with intellectual disability to select depending on their interests and desires.

Help with Working: Supported Employment

In an effort to better support people with disabilities through community-based integrated employment,

Virginia’s Employment First Initiative requires that service providers offer the option of helping and

individual into an employment status first before offering other services. Virginia has long led the way by

engaging individuals with disabilities in employment-related activities and providing effective, person-

centered services. Employment First is the next and very essential step in our history of helping people with

disabilities reach their fullest potential through improved employment opportunities.

Because some people with intellectual disability need more on-the-job training time and some need more

intense on-going supervision than the average person, Supported Employment is a valuable service. It may

be designed to support:

one person at one job site (individual competitive model),

a group of people at a single jobsite who work alongside people without disability (enclave,

benchwork or entrepreneurial model),

a group of people who travel together to several jobsites (work crew).

In each of these models the individuals work alongside and hopefully

form relationships with persons without disabilities. In the individual

competitive model, they are paid by the employer, usually at minimum

wage or above. In the other models, they may be paid at or above

minimum wage, or piece rate, or have a special wage certificate for the

employer to pay below minimum wage.

In the individual competitive model, the job coach (trainer) gradually

fades his or her presence until the individual is able to maintain the job

him or herself with ongoing support from the job coach.

In the two group models, on-going support and continuous

supervision is provided by a staff person of the Supported

Employment agency.


37

The ID Waiver funds Supported Employment of all types. It will pay for:

assessing the individual’s needs and developing the plan,

job development (i.e., searching the community for available jobs) to achieve an appropriate job match

for the individual and potential employer

on-the-job training in work and work-related skills required to perform the job

ongoing evaluation, supervision and monitoring of the individual’s performance on the job

ongoing support services necessary to assure job retention

training in work-related skills such as the effective use of community resources, break/lunch areas

and transportation/mobility training

staff transportation between the individual’s home and workplace when other forms of

transportation are unavailable or inaccessible

What types of agencies provide these services?

In all cases, the Supported Employment provider must have an agreement with the Department for Aging

and Rehabilitative Services (DARS) to provide Supported Employment services under the ID Waiver.


No other funding available

Because DARS is responsible for vocational services in Virginia, and local school systems are responsible

for the education and transition to adulthood of students in special education up to age 22, Medicaid will

only pay if DARS or the local school system will not fund these services for the individual.

Getting the Basics to Prepare for Working: Prevocational Services

Some individuals might prefer developing their work-related skills before focusing on learning a paid

community job. For these, Prevocational services are an option.

What are prevocational services?

Prevocational services are designed to prepare an individual for paid or unpaid employment, but are not

oriented to teaching actual job tasks. They are aimed at a more generalized result and are typically provided

to individuals who may not have yet been offered the opportunity to work and who are not expected to join

the regular work force within a year.

ID Waiver will pay for Prevocational services that provide the following:

Support to prepare the individual for employment, particularly in areas such as:

o attention to work

o motor skills

o accepting supervision

o steady attendance

o task completion

o problem solving

o safety

Support with personal care

Safety Supports to ensure the individual’s health and safety


38

Staff transportation of the individual between service sites

Who provides these services?

Providers of these services must either have a DBHDS Day Support license or have a vendor agreement with

DARS. They may be offered in center-based or community settings.


No other funding available

Because DARS is responsible for vocational services in Virginia, and local school systems are responsible

for the education and transition to adulthood of students in special education up to age 22, Medicaid will

only pay if DARS or the local school system will not fund these services for the individual.

Wage limitations

Individuals may earn wages from the provider for work done while expanding their job-related skills;

however, only those whose compensation is less than 50% of minimum wage are eligible for this service.

Those earning more may want to explore Supported Employment.

Developing Skills to be More Successful in the Community: Day Support

Some individuals’ lives will be most enhanced by developing their personal, social and adaptive skills during

the day and/or doing non-paid activities in the community, including volunteer work. These needs can be

met through Day Support services.

Day Support services allow peer interactions and an opportunity for community and social integration

through:

Support in areas such as

o gross/fine motor skills

o communication skills

o personal care

o use of community resources and safety

o appropriate social interaction and behavior

o problem solving

Support with personal care and use of community resources

Safety supports to ensure health and safety

Staff coverage for transportation of the individual between service sites


39

Where are Day Support services provided?

They typically take place in non-residential settings. Some providers have a central location at which

services are provided, though individuals also take frequent trips into the community to broaden their

experiences and practice their skills. Other providers are community-based, meaning that individuals do not

generally spend time at a central location, but are usually busy out in the community.

Who can provide Day Support services?

Providers must have a DBHDS Day Support license.


40

CHAPTER 6: CONSUMER DIRECTED SERVICES:

THE INDIVIDUAL IS THE EMPLOYER

Some of the ID Waiver’s newest services enable individuals to be directly responsible for screening, hiring,

employing and firing support staff. Instead of going to an agency that is responsible for finding staff who

may or may not be compatible with the individual, Consumer-Directed (CD) services afford the individual

an extra measure of control over employment decisions, with Medicaid still paying the employee’s salary

and some other related costs.

Which services can be “consumer-directed?”

Personal Assistance

Respite

Companion

For each of these services, the supports provided are basically the same as for the comparable agency-

directed service (described in the “Support Options in the Home” section).

My daughter can certainly tell me who she wants in our home to help her, but I don’t think she could

act as anyone’s employer. Can she still get Consumer-Directed services?

Yes! If she is over 18 but unable to assume the responsibilities of employer, a family member or other

caregiver can act as employer. If your son or daughter is under 18 years of age, a legal guardian must act as

employer on his/her behalf.

Can my relative or a family member acting as the employer, hire anyone?

As long as the person meets certain qualifications, he or she may be employed.

This type of service works well for those who live quite a distance from most agency providers, have tried

and been dissatisfied with several agencies or would really like to hire a particular person to provide support.

Even certain relatives, neighbors, or family friends who know the individual well may become CD

employees.

A CD employee must:

be 18 years or older,

be able to deliver the supports in the PC-ISP and comply with DMAS

requirements,

have basic math, reading and writing skills,

have a valid Social Security Number,

agree to a criminal records check,

be willing to attend training as needed,

have annual tuberculosis screenings


41

May we use a combination of agency and consumer-directed services?

Yes! For example, your family member may get both agency-directed and consumer-directed Respite, if that

combination best meets his or her needs.

I’ve heard that family members and parents could be paid to provide services to their family member

with intellectual disability. Is this correct?

Sometimes, a relative is the best person to support an individual with intellectual disability and the CD

services model enables this to happen. However, Medicaid payment will not be made to:

parents of individuals who are minors,

individual’s spouses, or

other family members/caregivers living under the same roof as the individual being

served, unless it is clearly explained in writing why no one else is available to provide

the service. The Support Coordinator can assist you in writing this explanation.

Note: If you become a CD employee for your family member (or in some other way a “paid caregiver”), you

cannot serve as the Employer of Record, and you are no longer eligible for Respite services under the ID

Waiver.

This all sounds good, but I’ve never been a “boss” before. How do I go about hiring, supervising and

even firing someone?

Fortunately, there’s help. In addition to the CSB Support Coordinator, who can answer some of your

questions and help link you to this service, Consumer-Directed services come with an additional helper – the

Services Facilitator (SF). This is a person who is paid by Medicaid to help you determine which CD

service(s) best suit the individual’s/family’s needs. He or she will assist you and your family member in

writing a simple ISP, then he or she will work with the Support Coordinator to get the services authorized. If

you don’t already have someone in mind to be the employee, the SF will walk whoever is going to be the

employer through the steps of the advertising process. The SF will also train the employer to screen, hire,

supervise and even fire employees, if necessary. The SF will make sure that DMAS’s requirements are met

by submitting all the pre-employment paperwork including requests for background checks. The SF will be

there on an ongoing basis as a resource related to the CD services. The Services Facilitator will also give

you a helpful booklet called the “Employee Management Manual,” and provide training on the role of

employer. Another helpful, free resource is the “Consumer Directed Services in the ID Waiver” workbook,

distributed by the Partnership for People with Disabilities (www.partnership.vcu.edu).


42

CHAPTER 7: OTHER ID WAIVER SERVICES

TO SUPPORT YOUR FAMILY MEMBER IN THE COMMUNITY

Skilled Nursing

Some individuals who receive supports through the ID Waiver have ongoing, serious medical needs (e.g.,

suctioning, catheterization, tube feeding, etc.). For these individuals, the services of a Registered Nurse or

Licensed Practical Nurse may be ordered by a doctor and funded through the ID Waiver. These nursing

services may be delivered in the individual’s home or another community setting. Nurse consultation, in

which the nurse gives staff and/or family members training in how best to meet the individual’s

medical needs, is also available through this service.

Personal Emergency Response System (PERS)

If an individual lives alone or is alone for certain periods of the day, but doesn’t need actual presence of

staff, the Personal Emergency Response System (PERS) is a Waiver service that might be helpful. This is a

device connected to a call center that is staffed 24 hours/day - 7 days/week. The

device can call for help whenever the individual indicates that it’s needed. Those

getting PERS may also be eligible for a device that automatically dispenses

medication, so that the individual always gets the right amount right on time.

Therapeutic Consultation

Sometimes family members or staff require the assistance of an expert in a particular field to figure out how

best to support the individual in the community. Therapeutic Consultation is an ID Waiver service that pays

the experts to assess the individual, develop a plan to address the individual’s needs and then teach the

family, direct support staff, Support Coordinators or other caregivers how to carry out that plan on an

ongoing basis to facilitate an improved quality of life and provide the individual the best chance for success.

Therapeutic Consultation can be obtained in the following disciplines:

Psychology

Behavior

Speech & Language

Physical Therapy

Occupational Therapy

Therapeutic Recreation

Rehabilitation Engineering


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For all but Behavior Consultation, the individual must be receiving another ID Waiver service along with the

Therapeutic Consultation.

Assistive Technology

There are numerous devices, equipment and computer software that can increase an individual’s ability to be

independent in daily living skills, mobility, communication and community life. ID Waiver will pay for

needed Assistive Technology recommended by a specialist of the appropriate discipline up to a limit of

$5000 per calendar year.


The individual must be receiving another ID Waiver service in addition to

Assistive Technology.

Costs cannot be carried over from year to year.

Environmental Modifications

This is a service that particularly benefits those persons with intellectual disability who also have physical

challenges and need structures built or adjusted to accommodate wheelchairs or other such devices.

Doorways may be widened, bathrooms modified, stair lifts installed and wheelchair lifts added to vehicles,

just to name a few of the possibilities. This service also has a limit of $5000 per calendar year.


The square footage of a dwelling may not be increased and the modification/installation may not be of

general utility to the household, but must be specific to the needs of the individual. Environmental

Modifications may not be used in a group home or other living arrangements owned or leased by a Waiver

provider.

The individual must be receiving another ID Waiver service in addition to Environmental Modifications.

Costs of one project cannot be carried over from year to year.

Crisis Stabilization

In spite of the presence of a support plan and the best of intentions, some individuals receiving supports

through the ID Waiver still experience periods of serious psychiatric or behavioral crisis. Crisis Stabilization

is a time-limited service designed to temporarily increase the level of supports to the individual at the time of

need to prevent hospitalization or loss of community services. It can be approved in 15-day increments, up to

a maximum of 60 days per calendar year.

How is it determined that someone is “in crisis?”

It must be assessed by a “Qualified Intellectual Disability Professional - QIDP” (someone with the required

education and experience) that the individual is at risk of at least one of the following:

Psychiatric hospitalization


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Emergency ICF-IID placement

Immediate threat of loss of community service

Causing harm to self or others

Then plans are developed for psychiatric assessment/stabilization, medication management, behavior

assessment and supports, and training to family members/caregivers in techniques designed to maintain the

individual in the community. Extra staff supervision to ensure the safety of the individual and others during

the crisis period is also available.


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CHAPTER 8: REGIONAL SUPPORT TEAMS

There are five Regional Support Teams (RSTs) in Virginia, one in each region of the state. RST members

include a variety of professionals in the field of intellectual and developmental disabilities with expertise in

complex medical and behavioral supports. Members come from state, local and private positions in the

community. The RSTs were developed to provide recommendations in resolving barriers to the most

integrated community settings consistent with an individual’s needs and informed choice.

For individuals living in the community, referrals to the RST are required when individuals are having

difficulty locating services in the community, when an individual and his or her family choose a group home

with five or more individuals, when an individual and his or her family choose a nursing facility or ICF/IID,

or when there is a pattern of an individual repeatedly being removed from his or her home. In these

situations, the Support Coordinator makes the referral to the DBHDS Community Resource Consultant, who

consults with the RST. The RST reviews options, considers individual needs, and may make

recommendations for other supports and services. The RST has no authority to deny an individual and his or

her family the opportunity to make choices; it is simply a resource to ensure that individuals are in the most

integrated setting consistent with his or her informed choice.

CHAPTER 9: WHO CAN I CALL IF I HAVE MORE QUESTIONS?

If there are questions you have about the ID Waiver, your first point of contact should always be your family

member’s CSB Support Coordinator. You can work with the Support Coordinator to find appropriate

supports within the ID Waiver and the community.

If your Support Coordinator can’t answer your question, he or she will most likely contact the DBHDS

Division of Developmental Services’ Community Resource Consultant for his or her region of the state.

These regionally-located staff provide regular training and technical assistance to Support Coordinators and

ID Waiver service providers.

“Act as if what you do makes a difference. It does.”

- William James


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Questions and Notes

What questions do I still have about the ID Waiver in general?

_______________________________________________________________________________________

_______________________________________________________________________________________

______________________________________________________________________________

What questions do I still have about home-based services?

_______________________________________________________________________________________

_______________________________________________________________________________________

______________________________________________________________________________

What questions do I still have about day services?

_______________________________________________________________________________________

_______________________________________________________________________________________

______________________________________________________________________________

What questions do I still have about consumer-directed services?

_______________________________________________________________________________________

_______________________________________________________________________________________

______________________________________________________________________________

What questions do I still have about the other ID Waiver services?

_______________________________________________________________________________________

_______________________________________________________________________________________

______________________________________________________________________________

What do I want to ask my Support Coordinator specific to my family member?

_______________________________________________________________________________________

_________________________________________________________________________________


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Other Resources

Virginia Department of Behavioral Health and Developmental Services

www.dbhds.virginia.gov

(804) 786-3921

Division of Developmental Services

www.dbhds.virginia.gov/ODS-default.htm

(804) 786-3921

Partnership for People with Disabilities

www.partnership.vcu.edu

(804) 828-3876 (Voice), (800) 828-1120 (TDD Relay)

American Association on Intellectual and Developmental Disabilities (AAIDD)

www.aamr.org

(202) 387-1968

The Arc of Virginia

www.arcofva.org/

Virginia Association of Community Service Boards

www.vacsb.org

(804) 330-3141

http://www.dbhds.virginia.gov/ODS-default.htm

http://www.partnership.vcu.edu/

http://www.arcofva.org/

http://www.vacsb.org/


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“Navigating the ID Waiver” Evaluation

Name: ___________________________________ Date: ______________ Optional

Please check one:

____ parent or guardian of a person with intellectual disability

____ other family member of a person with intellectual disability [relationship:_______________]

____ parent or guardian of a person with developmental disability

____ other family member of a person with developmental disability [relationship:_______________]

____ private provider staff

____ Support Coordinator

____ other [Please explain: ____________________________________________]

Please circle the appropriate number: Somewhat

Disagree Unsure Agree Agree 1. The information is helpful. 1 2 3 4

2. The information is organized. 1 2 3 4

3. The information is clear. 1 2 3 4

4. The information was reviewed:

____ one-to-one with a Support Coordinator

____ in a small group of family members and Support Coordinator(s)

____ in a large group

____ by self-study (no Support Coordinator help)

6. What did you like best about the workbook/training?

7. What didn’t you like about the workbook/training?

8. What are your suggestions for improving the workbook and/or training?

Please mail or fax to:

Billie Anderson

Community Resource Unit

1220 Bank Street

P.O. Box 1797

Richmond, VA. 23218-1797

Fax # (804) 692-0077

Documents

Navigating the Intellectual Disability Waiver: A Workbook for Families